It can't be happening again! It just can't. I was afraid I was too tired to do what I needed to do to help him. We were worn out from my father's death, Jacob's previous illness, mom moving in and us gutting her home to fix it up before she moved back home. How was I going to do this? But some where inside I knew I hadn't done all I could. I had a "good enough" attitude with the diet. I wasn't fanatical. And I really didn't fully understand it.
Well I tried to back track what we were eating and see if I could back him out but the symptoms were just too bad. I couldn't get it under control. As much as I didn't want to, I put a call into the GI. We were beginning to really but heads over his idea of treatment and mine. But I was so desperate. He wasn't sleeping and I would sit up with him at night afraid to sleep incase he would need me. When I asked if I could see the doctor, I was told that he was in India for a month and would have to wait. The nurse told me no other GI in town would see us because this was the only one that would agree to see children. That was confirmed when I called around. Suddenly I felt like I lived out in the prairie in the 1800's waiting for the doctor to ride by in his horse and buggy.
Weeks went by and no one would see him. Even a general practitioner. The emergency room was useless and our situation seemed hopeless. I remember looking at my husband and saying they are just letting him go. Finally, in the third week, we got in to see a GP who didn't believe it was a flare and just gave us an anti-spasmodic. Those had never helped in the past. He wanted to start all over himself.
At this point, Jacob was in constant pain, only able to eat about an egg a day. It was a very dark time. He would come out of his room in the morning wrapped in a blanket, sit on the couch and fall over and stay that way. I have never felt so hopeless in my life.
Finally, our GI came back and agreed to see us. His diagnosis was depression and anti depressants. Nothing to deal with the flare. I never gave the anti- depressants and we never saw this doctor again. Finally, one night while on our knees in prayer my husband looked at me and said, "We are going to Texas Children's hospital."
We got there the next day and they were wonderful. The proposed diagnosis and treatments were scary and so much worse than where we were before. We did another scope on a Saturday and had to wait till Monday for the results. They talked to us all weekend about some scary things. All we could do was pray. In my mind the possibility that we were about to lose him was very real. Praying was the best we could do!
By Monday, the clouds cleared and prayers were answered. As bad as his symptoms were, the swelling and ulcerations were not nearly as bad. It was only in the descending area. The light bulb went off and I knew the diet had been trying to work. Had I just done it fanatically. All those prayers for healing had been answered, I just wasn't listening. It was the diet!! That was our answer!!
I had a new resolve and so much hope. Jacob and I discussed it and we were both ready to commit. We were released from the hospital on Thanksgiving Day 2007 with so much to be thankful for. I went home and reread Breaking the Vicious Cycle. I searched the web and found the SCDlist. The group was so supportive and helpful. I started buying gadgets and calling people. I was talking with Lucy from Lucy's Kitchen shop one day and she explained to me about the microbes and how they reproduce. That they multiply rapidly every time you eat a bite of something illegal. The strict adherence to the diet starves them out. Wow now that really struck a cord with me.
We started and restarted the diet several times. We stuck strictly to the Stages on Pecanbread's web site. He was getting better by the day but not all the way there. We still had days where he would start a flare and I couldn't figure out where it came from. Then I found Erin with Nomorecrohns . She told me to email her the list of what he was eating. And on that list was canned Tomato sauce and Applegate Farms bacon. She suggested I cut these items out and with in 24 hours Jacob told me that his stomach didn't hurt for the first time in years. This time I cried but strictly tears of joy.
He has been pretty much symptom free since. He did start a nasty flare 2 years ago when I decided out of the blue to give him two Multi- vitamins instead of one. We started the Intro diet again and with in 3 days he was fine.
Since then Jacob has led a full and active life. He has taken a sail boating trip for 6 days to the Florida keys, been camping many times, traveled around and even went on a hiking trip in New Mexico for 14 days all while eating legal SCD foods. While he was in the hospital the last time, we decided the only way he would make it on this diet was to find a way to do the things he desired to do while staying true to the diet. I have also determined to find a way to provide him with his favorite foods from before... SCD style.
Now Jacob is 16 healthy, energetic and he loves the diet. He doesn't ever see a reason to go back to regular food. He loves how he feels. And his food is often the envy of his friends when they go camping. I am so grateful for the SCD because it allows you to control the illness instead of the illness controlling you.
The commitment to the diet is worth it. And my advice is to trust it. I pray that this rather long story encourages you. I remember so well those days in the beginning the darkness and the pain. If you are the caregiver it can wear you down and evaporate your hope. But if you will commit to fanatical adherence you will see the light again. Don't focus on what you are losing but what you are gaining. Get some SCD cookbooks and look at the wonderful foods that are available once you finish the stages. Beautifully delicious foods that will heal you instead of hurt you...what could be more wonderful than that???